So first things first, sorry for leaving everyone hanging so long after the last post… It’s been something of a chaotic week with Jo and I getting food poisoning followed by Jo going down with a virus keeping her in bed for 3+ days, me playing superdad and not a lot of time to spare outside that.
The scan is ok!
So after talking to the Oncologists the change in the one tumour is acceptable and my theory of it changing dimension but not volume because of Alex growing was met with “I like that theory” from Alex’s Oncologist Ram. So from that perspective we’re looking ok (if not good) for now at least, but the calculations as to Alex’s weight set alarm bells ringing with him – labelling his current weight as critical. 12.6kg at nearly 6 years of age is frankly, third world country weight and very distressing for us and meant that despite what turned out to be reasonable scan results we couldn’t really celebrate.
We’ve done our best along the way and now we’ve upped the ante with little Mr and are pushing him harder than ever to take in calories… LOTS of calories. So we’re giving him a heap of Sustagen Kids Essentials and going through a time every 4 days or so ($30 a pop… OUCH!). But 3 bottles of that is enough calories to meet his daily intake requirement for nutrients and calories. So any food we get into him in addition to this is a bonus and over the last 3 days he’s been eating a bit of pasta and chocolate which is great!
I’d like to nominate myself for parent of the year, Alex had Milkshake (the powder with whole milk) and a milky way for breakfast yesterday! 😀 But it’s calories that are going into him, so we don’t care right now.
In the 11 days since the meeting with Ram and getting lots of the milkshake and extra calories into Alex, he’s put on 1.2kg which means for now, we’ve avoided him having another surgery to have a Gastrostomy (a little tube from the skin on his stomach INTO his stomach) so we can tube feed him. This was a final resort since the NGT didn’t last more than a day or two each time, he vomited them back up. 🙁
So all in all, the results of the scan turned out pretty good. The weight is an issue that we’re doing our best to address and urgently as we can and hopefully we’ll manage to find time, energy and money to celebrate another minor victory over the demon that is cancer.
Thanks to every single one of you who has taken time to call, text, email or message any other way to check in with us. You help us stay strong and some days its really hard!
If you’re having a drink tonight; please join us by raising your glass (or beer) with a hearty F**K CANCER!
Much Love to all
Phil, Jo, Jenny and our Little Hero – Alex.